Guinea Pig…or Not?

Clinical trials. Are you a candidate? Are you interested in being in a trial?

Let me just start off by saying, I am a huge fan of participating in clinical trials. I was in one for nivolumab from July 2013 until July 2017. It was a wonderful experience.

What Are the Benefits of Participting?

Why am I such a fan of clinical trials?

The biggest and best benefit, in my opinion, is that when you participate in a clinical trial, you benefit from the latest science has to offer. In today’s world of rapid discovery, that’s huge!! When I got into my trial, nivolumab was just known by a number, BMS-936558. It was a couple of years before I actually heard the words nivolumab or Opdivo.

When I got into my trial, chemotherapy had failed me. I thought I was nearing the end of my life. I decided to join a clinical trial because I thought it would give me an opportunity to help future generations of lung cancer patients. I can honestly say that it never occurred to me that I would personally benefit from my participation.

I was under the same misconception as many people are when it comes to clinical trials. I thought I was going to be a guinea pig, a lab rat.

You could argue for the fact that you are a guinea pig, I guess. After all, you are agreeing to let researchers discover how a certain drug or drug combination works when administered to humans or in certain dosages.

Comprehensive Medical Care and Attention

But, what I wasn’t prepared for was the amount of attention that a person participating in a trial gets. In addition to having a doctor interested in cutting-edge therapies, I had a researcher who saw me at every visit. Every symptom was recorded and studied. I was shocked when I once mentioned in conversation that a new kitten had scratched me and even that made it into the trial report!

I didn’t have to do anything but show up for appointments. Every visit, a complete blood work up was done. If I had a cough or a fever, a specialist was called in right away. If my blood oxygen level was low, I was immediately sent to a pulmonologist.

I am not suggesting that all oncologists don’t care deeply about how every patient is faring, but participating in a clinical trial requires that medical personnel consider every little thing about your well-being and cancer care. You never know what will be significant so the medical team assumes everything is. (Even kitten scratches!)

Extra Attention to Details in a Trial

While I was in the trial, I seen every two weeks by my oncologist or nurse practitioner and my researcher. Now that I am no longer in the trial, but still getting nivolumab, I only see the medical team (minus the researcher) once a month.

Scans were scheduled regularly. The trial had very specific requirements about when the scans were to take place. Now, if I don’t push getting an appointment, I might only have scans every 4 to 6 months. I should still get them every 3 months but it easier for me to fall between the cracks now.

While I am not currently in a trial, I would quickly join another if the opportunity arises. I really miss the extra attention to details that came with being in the trial. And, certainly not least, I credit being in the clinical trial with saving my life! There is no higher praise than that!